mom md
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Posts posted by mom md
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To be honest I do not know how many IVIGs will be needed. My hope is that after puberty his immune system will be stronger and flares will be rare if not at all. Kathy Alvarez who works in Cunningham's lab thinks this may be true but there is no research yet to support this just stories.
I do think IVIG is the "sledge hammer" that stops the runaway immune system. Great analogy by the way. I think there is an immune issue and the strep infection is the perfect storm. I think the IVIG stops it dead in its tracks. PEX does too but does not always erase the "memory". My hope is that IVIG will. I think like other autoimmune diseases, each affected person is different some may be harder to cure. I have no regrets though with either PEX or IVIG except that I only wish I had known earlier.
We are still doing pretty well. I still see bumps though and we are 6 weeks after the second IVIG. Out bumps only last very briefly, sometimes even minutes and seem to be more along the lines of mood swings or anger outbursts. Call it a mother's instinct but I know it is related to the disease and not normal.
We saw a pediatric neurologist lass week (Tess Nelson) who is supposed to be the best. It took us a year to get in. She felt this was an autoimmune basal ganglian syndrome and the PANDAS/SC was a symptom of a bigger issue with his immune system. She felt we might need IVIG every 3-6 months to keep him at baseline and that this was not an isolated strep issue. She also asked about my other children and said it often runs in families. We have been seeing subtle signs in my 6 year old and took him in. His strep culture was negative, ASO was 384. Very interesting.
I keep trying to look at the big picture and not the details to some extent. We are MUCH better than one year ago. Excelling in school and now with some minor impulse issues. I still walk on eggshells because I know it can turn on a dime though. At least I know we are doing something right. He has only hada few REALLY bad days in the last year compared to before when they were all bad. I am afriad though that this new doctor is right. This may be more autoimmune and chronic. I hope she is wrong.I do think this healing though is very sawtooth. Five steps forward and two back. Very nerve wracking to watch. Hang in there.
hi mom ,
thanks for posting this update....
the underline parts Finally make sense!!!!!! that's why i'm here always reading. and hearing it and hearing it and now the way you worded it....to get that light bulb moment...
those statements are exactly what doc k and doc t said, in that order....
and thats why doc k says..do not pass go...go directly to ivig......i get it!!!!
ds does show myco p igg still but less i think.....no current test that man has, shows any sign of strep but we are having some good signs,,,,,but even if not....the system is in going 100mph, no brakes......and you need a tractor trailer to get infront of you to slow down and apply its brakes slowly as you roll into, and the tractor trailer is slowing down the system.........
and it doesn't matter if there is a current infection(foot on the gas peddle)its going and can't be stopped on its own(no brakes)
i think hearing another doctor say it only gives it more credence for me...
my concern as doc t says it is chronic.....but to what degree
like dc mom asked.....does she think ivig is needed 5 times, or monthly or forever???/
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I think she is thinking periodic high dose IVIG (1gm/kg x 2 days) every 3-6 months. She wants to talk to the immunologist and see. I think they want to wait till we flare again and make sure it is needed. My guess is that will be in the fall (if history tends to repeat itself). Tess Nelson (first name Tesita I think) is a pediatric neurologist in Charlotte. It took me 9 months to get in! There is a new doctor who just moved here (Dr. Patel at Carolina Medical Center) who is board certified in pediatric infectious disease and immunology. I am thinking of getting my second child into see him (his ASO is 384 and his antiDNase B is pending) but my guess is he has early signs. I think the more we get these doctors talking and working together the better. The good news is I can name 7 doctors quickly in Charlotte who all believe in PANDAS and are willing to treat!!!!! Pediatricians,neurologist, infectious disease, and immunologist.
We did IVIG after PEX even though it was an immediate cure because I was worried we needed to "reset" the immune system and IVIG might do a better job in doing that. We had 4 months of no symptoms but when his immune system was challenged he flared. Kind of like re-booting your computer. I have not taken PEX off the table though and would definitely do it again if the doctors thought it was needed.
Heard today that BCBS is retroactively dening our IVIG. The battle begins!!!!!
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Wanted to see if IVIG worked first and see if it could bring him to "normal" without any meds. She also said it is nice to keep something in your back pocket.
We went to see someone who is considered the top pediatric neurologist in this area. She recommended this drug as a possibility in the next year or two if we felt some ADD/impulse issues were left from the disease. She said it helped kids with tics control them and did not have any neuro side effects which is nice. She felt like it was a great option. I would definitely try it if needed.mom...why a year or 2 from now.....too young...or want to see if ivig works first
...how old is your child now?
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We are still doing pretty well. I still see bumps though and we are 6 weeks after the second IVIG. Out bumps only last very briefly, sometimes even minutes and seem to be more along the lines of mood swings or anger outbursts. Call it a mother's instinct but I know it is related to the disease and not normal.
We saw a pediatric neurologist lass week (Tess Nelson) who is supposed to be the best. It took us a year to get in. She felt this was an autoimmune basal ganglian syndrome and the PANDAS/SC was a symptom of a bigger issue with his immune system. She felt we might need IVIG every 3-6 months to keep him at baseline and that this was not an isolated strep issue. She also asked about my other children and said it often runs in families. We have been seeing subtle signs in my 6 year old and took him in. His strep culture was negative, ASO was 384. Very interesting.
I keep trying to look at the big picture and not the details to some extent. We are MUCH better than one year ago. Excelling in school and now with some minor impulse issues. I still walk on eggshells because I know it can turn on a dime though. At least I know we are doing something right. He has only hada few REALLY bad days in the last year compared to before when they were all bad. I am afriad though that this new doctor is right. This may be more autoimmune and chronic. I hope she is wrong.
I do think this healing though is very sawtooth. Five steps forward and two back. Very nerve wracking to watch. Hang in there.
Hi Claire:We are now 12 weeks post IVIG's and we are still having bumps, but they do not last as long and the low's are not as low. I do believe in the brain healing aspect of this illness.
I feel that we see both bumps in relation to exposures as well as just plain healing bumps. Initially, the bumps could last as long as 4 to 5 days and now we are down to 1 bad day followed by several great days. Dr. Kovacevic did warn us about this, although, I do become paralyzed with every bump.
Elizabeth
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We went to see someone who is considered the top pediatric neurologist in this area. She recommended this drug as a possibility in the next year or two if we felt some ADD/impulse issues were left from the disease. She said it helped kids with tics control them and did not have any neuro side effects which is nice. She felt like it was a great option. I would definitely try it if needed.
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Thank you for your post. It is helpful beyond words to hear a success story. It gives us all the strength to continue the fight.
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I took my second son in today for a strep test and bloodwork. I have noticed subtle things since December but I thought I was being paranoid. Today the teacher called and said she had noticed some things too. She had my older son and knows the story. She felt she was seeing some of the wierd things we saw three years ago (strange hand movements, mood swings, impulse issues, inability to sit still). I feel like it is ground hog day and it is starting all over again. He is MUCH less symptomatic than his brother but I have seen some other things. He wakes up at 5am now (used to have to wake him), can't look you in the eye, doesn't like to wear his shirt, chewed on his shirt for a while. My guess is my maternal instinct is right. His strep culture was negative today but we will wait on the culture. He also drew an ASO, AntiDNaseB, and ANA to start. I will also get Dr. Cunningham to mail us a test kit. He felt he had sinusitis and started him on amoxicillin for 10 days. We will switch to azith if it comes back positive.
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IVIG-age 8
Mild exacerbation at time
Dose-1gm/kg for 2 days (total 2gm/kg)
Immune deficiency- not classified as CVID but failed vaccines, severe allergies
Post IVIG-
AFter first IVIG in Jan 2010-exacerbation for 7-10 days then almost no symptoms for one month (and very calm and patient). At week five return of some ADD type behavior with poor impulse control
Second IVIG 3/10- no real exacerbation but sporadic symptoms seen, now week 5 post tx and still mild symptoms present but episodic (seem to see only when tired or excited (toe walking, wrist rolls, mood swings). Overall we are MUCH better than a year ago.
Neurologist and immunologist here are concerned this may be more of an autoimmune syndrome than a strep one and are considering IVIG every 3-6 months to keep him at baseline. We are waiting for next flare to decide.
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We saw the pediatric infectious disease doctor this week and she warned us about the possible rare side effect of hearing loss from the macrolide drug class (azithromycin). She said it is very rare and usually with clarithromycin (biaxin) or older macrolides but did recommend a hearing tess at least twice a year while we were on it. Azithromycin is used often in children with cystic fibrosis long term and considered pretty safe. I do think it would be a good idea though for all of us on azith to keep an eye on our kids hearing. Often the hearing loss is reversible if caught early.
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I would plan to do it. Press on!
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I don't know what she recommended but we did 1mg/kg for two days (a total of 2mg/kg). He had two treatments 8 weeks apart. He is doing really well.
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We are doing great. Dr. L helped speak to my immunologist here in Charlotte and we did our IVIG here. She was great and I hope to be able to work with my local doctors here for maintenance but will definitely consult her again if we slip back.
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I am very interested to read your post tonight. We have noticed a definite sawtooth pattern, more after the second IVIG than the first. The first one he had a flare that settled at about 7-10 days post tx and then started to flare a little at the five week point. We did the second treatment 8 weeks later. We had a 1-10 days of great and then have had a bumpy road since. Nothing major but things I reconize from the past (crying easier, lack of focus, forgetting things, poor impulse control at school, and an overall excitability at times). In my gut I felt it was the IVIG really getting the job done. His teacher seems concerned that she has not seen the improvement this time but I think we are just re-visiting old behaviors. When this all started this was how it was...almost just ADHD like.
I remember this reaction from microbiology and I appreciate the comparision. I think you are dead on and it has given me more peace to stay patient. We are a thousand times better than before but it is still hard to see the flares. Thank you again.
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Thanks for posting. My son is 4 months post-IVIG and doing great. We are still taking it one day at a time but I beginning to relax. Hearing your story helps.
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My son has SC/PANDAS and would fall out of chairs or fall down when walking to class. Dr. Latimer said it was called the rag doll effect. Very wierd.
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Your case is very interesting and am am so glad you are seeing Dr. Latimer. She has been a neurologist for over 25 years and has seen it all, One of our biggest reasons for seeing her was to answer the question, what else could this be? You will be in good hands.
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I will have to pull the paper tomorrow but very interesting. My nephew started ticcing in the fall and recently was diagnosed with PANDAS. My son has PANDAS. My great aunt had Sydenham's chorea. My grandmother, mother and myself had scarlet fever. My sister (one who's son was recently diagnosed) had post-streptoccocal glomerulonephritis as a child. There is definitely a genetic component here. I am watching my other children very closely.
We pulled out our family tree tonight for a school project and this side of the family has always lived very long (into 90's-100's) even going way back. Makes you wonder if this "hyper" response to strep has some protective capacity but has just gotten out of hand...
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I like to think of it like chemo...when you see the hair fall out you know it is working. It is targeting antibodies that were hiding out in the crevices of small vessels. When you see the behavior you know it is doing it's job. My son is two weeks out his second dose and I have been seeing stuff for the last three days. It is not like an infection where once you get control with antibiotics every day is better than the day befoe. It is sawtooth. Hang in there.
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We ended up getting Gammunex but our immunologist wanted us to get Gammuguard (the hospital substituted it without asking and she was not happy). She felt the viscocity of the Gammuguard was better and it's IgA levels were less. She actually preferred it over Gammunex.
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Welcome to the club!!! No offense, but glad to have you in it. I did want to add the point that many might find interesting...our great aunt had Sydenham's chorea, our grandmother had scarlet fever, our mother and I both had scarlet fever, my sister (mom23boys) had post-streptococcal glomerulonephritis as a child, and now our kids have PANDAS. Not a coincedence I am sure. Does not seem as if we come from such great stock now does it!
Actually though, we both may be the PANDAS success stories of how you can learn to live with it. We both used our OCD tendencies to get though a lot of schooling!
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We are on azith 250mg and have had no issues. He does get a probiotic though. Out infectious disease doctor said a lot of cystic fibrosis kids are on it chronically like we are because it is tolerated so well (and it calms the immune system).
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It is my understanding that immunotherapy stimulates the immune system which can make autoimmune diseases (like PANDAS) worse. The World Health Organization released a statement that people with autoimmune diseases should be careful with allergy shots or immunotherapy. I do not think they would necessarily be bad for someone with immunedeficiency but not so great for someone with an autoimmune or overactive immune system.
The sublingual drops are used in Europe but have yet to recieve FDA approval over here for children. An ENT I know is on the board for their approval and said it may be a while.
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Shonda Schilling wrote a book about her son who was diagnosed with Asperger's at 7, older son with new onset anorexia, other son with ADHD...sound familiar. I e-mailed the foundation she set up for melanoma and they said they would forward my e-mail to her. I hope she will contact me or at least read about PANDAS. Maybe I am wrong...
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I would see Dr. O or call her and say you are ready to go through IVIG at Dr. C's recommendation but have concerns over the dose. Get her opinion. They are both supposed to be working together. She was very adament we do a higher dose despite Dr. C saying we needed .75gm/kg. She seems a little more comfortable with IVIG. I would ask her opinion and then ask her to discuss it with Dr. C. I am sure she would be willing to just order it since you are her patient and Dr. C has recommended it. Please do not stress! The hard part is over. It will get done.
She was willing to do another treatment on Carter and asked me when I wanted it. I told her I wanted to stop and wait since he is doing excellent! She said we can revisit it if it is ever needed again since we know it works. We both left feeling we were on the same page.
Does anyone know of anyone who has been helped by lower doses of IVIG?0.4gm/kg
This is what our neurologist wants to start with. I understand this is too low for PANDAS?. He says this is what he always starts with unless a very severe case. Is this just wasting our time? Trying not to stress but I'm not so patient and I won't get to talk to him for a few weeks. Does this just guarantee a second treatment? Does it get us anything? I won't say no to it if that's all I can get.
Mom md, can you tell I'm starting to stress?
Susan
IVIG retroactively denied
in PANS / PANDAS (Lyme included)
Posted
Just heard today that BCBS NC retroactively has denied IVIG. Not sure exactly what that means because they have already written the check for the first but does not sound good. I am planning to get all three doctors that said we needed it to write letters an include the codes (autoimmune not otherwise specified, chorea, autoimmune encephalitis, etc ). I think it is interesting though that they covered PEX and the first IVIG and then just starting dening. It is like a magic number was reached. My guesss is we will go to legal action next if needed. Any helpful hints? (especially since the new neurologist thinks he may need it every 3-6 months if he continues to flare).